I was at a high point in my career at the Genome Sciences Centre in April 2003 having played a key role in our successful effort to analyze and put together the SARS coronavirus genome. I had stayed up past 4 am on my own in the lab on a Friday night working with and analyzing the data with the hope of completing assembly of the genome sequence. When the full sequence appeared on my screen, I yelled in excitement but there was no one around to share my enthusiasm. The following day further analysis to confirm the result was needed and by the end of the day we aimed to publish the complete sequence before the CDC in Atlanta. The news spread fast and put the GSC on the world-wide map. Life was good.
Ten months later, on February 23, 2004, my life changed forever. I collapsed in a grand mal seizure and was subsequently diagnosed with a very serious form of brain cancer—Grade 4 Astrocytoma, also called Glioblastoma Multiforme (GBM). Now I’d have to deal with the fact that I had a cancer with an average survival of 13-15 months (if treated). However, being somewhat drugged up with medication, I do not think I fully grasped the seriousness of my situation. Or I was in denial, Or, I felt there was a reason I got the cancer. Indeed, I feel this last thought played a role in accepting my situation and in my survival.
Surgery to remove the tumour was a risky procedure given its deep location (in my head!) and so went forward only with chemotherapy and radiation. I took a break from work getting the treatment, cheering my hockey team to our first ever championship win (tried to skate in the championship game), started to date someone and ran a full marathon in Iceland a year later in August, 2005.
However, while plans were on the way to return to work, I had a recurrence late 2005 and as the original chemotherapy rarely works a second time with GBM (this cancer is very heterogeneous—and any cells initially resistant to chemotherapy have multiplied—the new tumour is genetically different than the one at diagnosis), I was placed on a clinical trial drug, which failed horribly. The bright side of things at the time was that I got married to the beautiful woman I had met the year before. But through the first 8 months of 2006, I had to take the originally chemotherapy drug as a last measure of hope that it would work. It did. I’ve been clear of the cancer since September 2006.
I returned to work and continued researching various cancers including brain cancer (DIPG and oligodendroglioma). I wrote and published a piece of software to analyze RNA sequence data and during this time I worked hard in various capacities to contribute back to the brain cancer community such as initiating the first art therapy program at the BCCA for brain cancer patients, meeting newly diagnosed patients, and co-chairing the Patient and Family Advisory Committee for brain cancer patients.
For 7 years I coordinated Brain Tumour Foundation of Canada’s Spring Sprint, a walk/run where I met and got inspired by other brain cancer patients. I did the first Ride to Conquer Cancer after creating a team called the Brainiacs with another GBM survivor in 2009--a 2 day 280ish km bike ride, fundraising for cancer research. More recently I’ve been involved in a couple initiatives here in BC centered on patient involvement in healthcare. A very important and exciting initiative that hopefully will overhaul the health system for the benefit of all; patients, caregivers, healthcare teams and researchers.
It has been a long time now since my life instantly changed forever that day in 2004. I now have a beautiful daughter which adds to my inspiration to continue to live and thrive. Many people over the years have asked me how and what did I do to survive—many hoping to hear about specific things that they could apply to their situation such as specific diets, foods, drugs, and supplements. My response has always been that we are all different and what works for one may not for another. That ultimately, we need to leverage our mind (which can be hard when the cancer is in the brain!) and soul to heal ourselves. We have tremendous power and strength to do just that. Not that medical treatments do not work; I don’t think I’d be here to write this had I not taken the chemotherapy and radiation. But there is increasingly strong evidence that positive thoughts can have a biological and biochemical effect on our body.
For those interested in some specifics, my tumour had the IDH1 R132H mutation and the MGMT promoter methylation; consistent with my age (29) of presentation and favourable prognosis.
You can learn much more about me and what I've been through from various stories and media reports over the years here.
I've often been asked what I did to survive and it's hard to point my finger to any one thing (and I don't even have enough fingers to point to everything!). However, I have generated My Path to Healing to show what I believe helped me in dealing with the cancer, its side effects, moving forward and well maybe even helped me to survive.
I am in the process of writing a memoir of my cancer experience. There are many amazing things I’ve been through and I hope you will be interested in the book when it’s published. When that time comes, I will post it here!
Had I not fallen, I would not have arisen.